Another amazing story to share with the community brought to you by Karen Brown, the mother of Ellen, a young type 1 who’s having a fantastic time with her Football/Futsal at the moment. Ellen & Karen have been big advocates and supporters of our work at TDFC from the very early days so it’s brilliant to be able to share their story! No more words needed from us, over to you Karen…
“Our daughter Ellen was diagnosed at age 8 with type 1 diabetes. As you all know it hits like a bomb and the early days are hard. Somewhere amongst the haze of diagnosis we made a decision that when we got Ellen home we would stabilise her doing all of the sport she usually did. So the day after discharge we took her to school for a few hours and the following Monday she started back swimming. I sat on the edge of the pool chewing my nails hoping she would be fine. Strangely enough the year she was diagnosed is the only year she hasn’t played football (played 1 year of netball and hated it!). Ellen prefers to manage her diabetes with a pump (Medtronic) and we use CGM periodically.
Since then it has been buckets of football and within the last 4 years she has also played futsal in the off-season. It is amazing how different the two are to manage. Football often sends her low- particularly in the cold Canberra winters (we live in Australia) whereas futsal sends her high due to the adrenaline. As futsal isn’t as big in Canberra her futsal club (Boomerangs FS) travel to Sydney to play in a Sydney comp. So every Sydney game we travel between 2 ½ to 4 hours each way (depending on what side of Sydney the game is) to play. The weather in Canberra is quite dry whereas Sydney can be humid which can affect Ellen’s BGLs (sends her low) so at the half way stop en route to the game we reduce insulin if she has any carbs and put a reduced temp basal on. We find doing low carb on the morning prior to the Sydney trips much easier to manage. At least we are only fixing the humidity problem. Then during the games she heads high! Sydney games we nearly always use CGM to help keep an eye on things. If it’s a home game its breakfast as usual. After the game she eats what she wants.
Whilst having diabetes can be tough when you are playing football and futsal, we run at it with the attitude that if we have a tough day diabetes wise we look at why and see if we can do something different. There are days when you just can’t explain why the numbers are what they are! All of her coaches and teams have been really supportive and the boys often try and guess her Blood Glucose Level – she plays in the Boys National Premier League. Ellen also chooses to celebrate her ‘diaversary’, so the team usually hangs out for the cupcakes she takes along to celebrate another year kicking the butt of diabetes.
Having diabetes hasn’t stopped Ellen from achieving in soccer and futsal. The last 12 months have been particularly rewarding!!! 12 months ago her girls futsal team won both the premiership and championship in the Sydney comp. For outdoor her BBFC U16’s team made the Grand Final and won in a penalty shootout. She then made the ACT team (regional team) to play futsal at Nationals in January – they were runners up in the Grand Final in a penalty shootout. And a couple of weeks ago at the presentation night for Boomerangs FS, Ellen was awarded female player of the year. We are pretty proud of her. Winning isn’t everything but it is great to get some wins and they have been a while coming!! Though I must say the victories are much sweeter after the effort you put in to get the diabetes right. (excuse the pun!)
As much as it is a challenge, there have been lots of good things about having diabetes in our lives for the last 8 years. We have made a whole new bunch of friends we wouldn’t have otherwise met. Whilst it is so nice being able to converse with those who understand the challenges and learn new things from. Ellen has had the opportunity to speak at JDRF fundraisers and she was recently asked to take part in some research at ANU.
Being part of TDFC has been a huge help though. It was so nice to hear from others who play football and be able to read about their experiences. With Ellen being a girl it was so nice to read about Noel and what she has achieved. We got to meet Zac (UK DiaEuro Player) at one of Ellen’s games in Sydney and hope to see him again soon. Whilst it’s also great to see that Chris represented his country in Futsal, which gives Ellen so much hope she can achieve the same.
To any young footballer out there, chase your dreams. Ellen’s favourite saying is “I don’t live with diabetes, diabetes lives with me”.”
A really great blog written by Karen Brown and a huge thank you from us for putting it together. If there’s anyone out there reading this who’d like to contribute in a similar way get in touch! We’re always on the look out for blogs and stories to share…
It’s been a while since I got myself 5 or 10 minutes to write something for the blog but I felt my recent trip to the Diabetes Junior Cup was well worth finding it…
I thought to convey the trip I’d pose myself a few questions which helped me tell the story and purpose behind why I felt TDFC should reach out and connect with this event.
Where did you go?
So myself and Zak (One of the UK players from the DiaEuro team) flew to Dublin, Ireland to visit the Diabetes Junior Cup at the National sports centre in Blanchardstown. What a great facility that is by the way! So many sports located in one central location to support Ireland’s athletes and their international ambitions. It was a pleasure to visit…
When was it?
We were in Ireland from Thursday to Saturday over the UK bank holiday weekend at the end of August 2018.
Who did you meet?
Across the 48 hours we met a number of people involved in various different projects supporting people with Diabetes in the country. Firstly we met with Cathal, whom after seeing TDFC’s work with the UK all diabetes Futsal team that went to DiaEuro, is keen to replicate it and create a team for Ireland ready for the 2019 tournament. It was brilliant to see his enthusiasm for the idea and the inspiration that the UK team provided him. I really hope they can pull it off over there as it would be an amazing “friendly” rivalry to have between the UK & Ireland!
Secondly we met up with a Kate Gajewska and a group of type 1’s in downtown Dublin to chat about all things diabetes over some food and drinks. Sharing experiences with the condition are a form of therapy I find and if you can laugh about it whilst completely understanding what others are going through it diminishes the negativity of what Diabetes can do. It was really nice to catch up with Kate whom I know through the work of the League of DiAthletes (www.leagueofdiathletes.com) and it’s always great to hear new perspectives on the condition from a different, albeit similar, country and culture.
Lastly we had the Diabetes Junior Cup event day where we met some senior members of the Diabetes Ireland team whom gave up their Saturday to support this worthwhile cause. We had a brilliant opportunity to discuss the event, their plans for the future, our work and how people with Diabetes are supported in Ireland.
I have to say a massive thank you to everyone we met on the trip. We were made to feel very welcome! A special thank you to Kate who managed to give us more than our fair share of lifts around Dublin.
Why did you go?
The key reason we went was for the Junior Cup event which was designed to bring children with type 1 diabetes together to give them the opportunity to share their experience and make friends. Having lived with Type 1 for 19 years and not really shared what it was like for 17 of those years, I really wish I had sooner. This event was another perfect example of how we can provide peer support in the diabetes community.
Not only was it good for the kids to come together they got to have a lot of fun too! But I’m sure it was also beneficial for parents to discuss with others the stresses of supporting a child with the condition. Having this kind of event is a wonderful representation of how the community comes together to help each other.
With such a close link to what we do at The Diabetes Football Community I felt it was really important we were there to learn, network and support such a fantastic football event for people with Diabetes. The learning and friends we made whilst there will hopefully lead to promising future collaborations and events for the benefit of children, parents and adults living with Diabetes who share our passion for Football!
It was also great to be able to give our Irish friends an idea of what it took to get the UK diabetes Futsal team off the ground during the time we were there, in the hope that they can replicate that for next year! Fingers crossed we will be competing against each other in the near future!
If you want to check out myself and Zak’s story on the day head over to the below link:
What does the future look like as a result of your trip…?
The hope is that through developing links with this event and Diabetes Ireland (www.diabetes.ie ), TDFC may in future be in a position to put on this kind of event in the UK for children with type 1 Diabetes. As always it takes a great deal of organisation and support to get something like this off the ground but we’re hoping that the community will support us in trying to make a football participation camp/tournament for children with diabetes happen.
If anyone in the community would like to support us in trying to make this happen in 2019 please do get in touch via our email address:
After months of behind the scenes work from myself, Ferenc Nagy and the wonderful Andrewartha family, who star in the documentary, we have now finally launched the #WalkInOurBoots campaign to raise awareness of Type 1 Diabetes in Football.
TDFC wanted to showcase what life was like for a young footballer living with the condition and its effect on his family. This campaign is a “real world” example of the challenges and daily routines this condition forces upon people who were dealt this card in life.
I found parts of this documentary very emotional to watch, as someone who lives with the condition, I feel every word they say. I hope the emotion and management implications of Type 1 Diabetes are captured, to ensure we can continue to challenge the powers that be to help change perceptions within society and ultimately improve inclusivity for people living with the condition in our sport.
I hope you enjoy…. PLEASE SHARE AS FAR AND AS WIDELY AS POSSIBLE.
It’s great to be able to share a blog from another member of the TDFC team… I simply asked our squad “Who would like to write something for the site?” and Jon came forward without too much persuasion to share his story with the condition! It’s a great read so I won’t say too much more…. In his own words, please enjoy Jon’s story:
“Having been diagnosed as a diabetic at 5 years old in the mid 80s, playing sport as a non diabetic isn’t something I have ever really experienced. I remember locking myself in the hospital toilet the morning of my diagnosis, scared of the syringe that they wanted to inject me with (we’re talking the size of a 30cm ruler!!). Originally I was on one injection per day, and then soon moved to two; one 30 minutes before breakfast, and one 30 minutes before my evening meal. The dosage was dependant on the size of the meal I would be eating (obviously a bit harder when eating out!). Carb counting came from a big book in 3 sections; red (high in sugar), amber (okay) and green (good to eat).
Because I was so active as a child, it was decided to run my blood glucose levels slightly higher as running about would invariably drop it down again! If I was higher than normal in the evenings, my mum would send me on a run around the block (about 10 minutes) to get it down! When playing football, whether training or a match, I usually had a mini mars or something similar at half time. I’d probably have a slice of toast or a digestive biscuit beforehand. Very rarely did I check my blood glucose levels before, during or after. As I got older, and into my teens, the mars bars went from mini, to fun size, to full size! Again, I relied more on feeling than actually testing my levels, and I wasn’t really challenged by doctors about this.
At about 15, I started seeing Dr Ian Gallen as my diabetic specialist and got moved onto pens for my insulin, injecting 4 times per day. He took an interest in the diabetes and sport, and I started to do a bit more. Mars bars turned to Lucozade, and the checking started. However, I would still run them higher through fear of going low during a match (something I experienced on my debut for my under 11s team!). I wasn’t aware at this point in my life that having glucose levels in range would equate to a better performance on the pitch. I was also playing hockey to a county standard, cricket, rugby and athletics.
However, through my late teens and early 20s, injuries set in, and playing time reduced. By 25, I’d had 3 operations on my right knee and one on my right ankle. The rehab and recovery was (and is!) awful. Being unable to play meant blood glucose levels were going higher, as well as the challenging mental state of mind. When I got back to playing, I would be back to my old ways and not testing. I’d have half a bottle of Lucozade before the game and the rest at half time. I’d have similar when training (half before, half during) and I honestly couldn’t tell you how this affected my glucose levels! Unfortunately, this lack of testing, as well as injuries, went on into my late 20s. I’d lie to the doctors, although they must have been suspicious by my HBa1C results!
In my late 20s, I met my now wife, who is a nurse. Through her nagging, and changing diabetic specialists, I started doing a lot more testing (although nothing like I do now). My pre match, half time and post match or training snacks would differ each week, dependant on the blood glucose level I presented. At 33, I finally gave in and moved onto an insulin pump, which has changed my life. I probably test 8-12 times per day, and my HBa1C is at an all time low. Unfortunately, the injuries didn’t stop. 10 operations in the past 16 years (one on my eye due to diabetic complications) meant that I had to call time on my playing career last summer. However, I have now turned to cycling as I’m still recovering from a condition in my pelvis and hip meaning I struggle to run. Managing my glucose levels for this can still be difficult, and no two days seem to bring the same results!
So, what would I do different, what advice would I give and what have I learnt about sport and being diabetic? I would definitely say testing is so important. In later years, I really noticed how my performance on the pitch would be better the tighter my control was. If I was too high, I would feel sluggish, slow and off the pace. However, having that tight control is important all week, not just on match or training day. If it is higher than hoped, it’s not the end of the world. Sometimes it can be high and I have no idea why! Testing during a game or training is also important. There’s no shame in doing it. As a sporty youngster, my only role model was Gary Mabbutt (someone I still look up to), a professional footballer living with type 1 diabetes. However, I wasn’t aware of anyone else who I played against who was diabetic, and always thought I was on my own. Having something like TDFC is amazing, as it enables so many people to share their inspiring stories. Just remember, you’re not alone in being a diabetic!“
Upon reading Jon’s story I wanted to ask him a few questions to delve a bit deeper into his life experience with the condition….
CB: So, there’s obviously a vastly different way of controlling Diabetes in 2018 compared to when you were diagnosed in the mid 1980’s what sticks out as being drastically different?
JP: “When I was first diagnosed as a diabetic, the treatment seemed very basic. One injection per day, one appointment every 6 months to a year, basic carb counting, no real research or good information on playing sport with diabetes, it was all generic, and given to me by doctors and nurses who a) didn’t have diabetes themselves; and b) didn’t play sport!”
CB: You mentioned in your story that you lied to your healthcare professionals… Why did you feel like you had to do that?
JP: “Sadly, I felt I had to lie to the doctors and nurses I saw as I thought I’d get told off for not testing enough. I think I also felt that there wouldn’t be any problems if I could just keep them happy. Long term complications of poor control and benefits of keeping close control were never really explained to me (that I can remember) until later years. Even then, I guess I thought it’ll never happen to me”
CB: What were the difficulties you faced when injured and managing your Diabetes? Was that the hardest part or was it the mental battle with being injured as a sporty person?
JP: “My glucose levels would really rise when I was inactive. Since a young age I’ve been active and on the go, so have always used that as something to bring the levels down, meaning I didn’t have as much insulin as I would if I was inactive. Being inactive was incredibly hard both physically and mentally. Blood glucose levels would go up, so I’d increase the insulin, meaning I’d then go low, then I’d have too much to eat or drink and go back up again! This then had the knock on affect mentally. It was hard being unable to do something that I’d grown up doing (not just football, but physical activity of any sort) and feeling like a gift you’d been given was being continually taken away was tough. Then, as I would be coming back, I’d either suffer another setback, or get a small run of games before another injury. (Ironically, since stopping playing, I’ve managed to shed quite a bit of weight, which would probably have helped me a little bit years ago!). So I’d have the mental side of not playing and seeing all my team mates playing and training every week, while I was stuck waiting for my injury to heal. That combined with the glucose levels yo-yo-ing was tough to take. Better control would have helped me with my recovery. However, being injured did mean that I could spend more time with my family (that was about the only benefit, although I’m sure my wife would tell you that on a Saturday around kick off she’d rather I wasn’t moping around complaining that I wasn’t playing!!) I couldn’t go and watch my team play as it made me cross and angry I wasn’t playing!”
CB: What’s been your proudest moment with Diabetes and Sport?
JP: “I feel that just continuing to play sport for as long as I have whilst having diabetes is a triumph in itself. It should never stop you doing anything, but especially in the 80s and 90s, there wasn’t really any network or support in place if you were struggling or not sure at all. Apart from Gary Mabbutt, there were no real sporty role models with Diabetes to seek out guidance and inspiration from. I’ve now spoken to children and adults (including one family member and a best friend from my childhood who are both active) who have been newly diagnosed and managed to convince them that you can continue life normally without letting diabetes hold you back. They see that I can continue to participate in physical activity, so why can’t they! It has also helped the people around them, who don’t have any knowledge of diabetes, see that you don’t need to let it hold you back, whether in sport, or just life in general.”
CB: What’s been the hardest thing you’ve had to deal with when dealing with Diabetes around football?
JP: “Probably other people (coaches, parents etc) knowing what to do or how to act. I was never shy about telling team mates I was diabetic, but also never shouted it from the rooftops. As an adult, I made sure that there were a handful of team mates who knew, but as a child it was a bit more difficult. We had one parent who was a nurse who watched her son most games, so I think that put my parents mind to rest (I didn’t like them watching me for some reason!!). My manager from u11 to u16 asked my parents about what he needed to do, and my best mate’s Dad would quite often be there (although he did go and sit in the car with my supplies because it was cold one game – typically when I needed them!!)
Managing the control in general can be difficult; it can also be easy, but as no two days ever seem the exact same, it just adds to the fun! I could be absolutely fine one game, do exactly the same the next, and it all be completely different. Sometimes I‘d go too high before a game, sometimes after. I’d always make sure my bag was on the side in the dugout fully stocked, and sometimes give a bottle of Lucozade to our keeper to put in his goal.”
CB: What would you like to influence in the future around Diabetes? What was your reason for joining TDFC?
JP: “I’d like diabetics and their families to have as much support as possible and to encourage them to keep active. There’s no reason to let diabetes hold you back. If I can make a difference to one person who is struggling with their diabetes, or even if they’re not struggling, I’ll be a happy man! I’d also like to make sure that people are educated so diabetics can always have the same opportunities as others.
I discovered TDFC through social media. I think I clicked with it straight away, wishing I’d had something like this when I was younger. I want to be able to help and inspire future generations of diabetics, of all abilities, so that they may go on one day to inspire others!”
An amazing story Jon and thank you for sharing it with the community. 😀
I’ve been wanting to do this for quite a while now as I think it’s a fascinating opportunity to pose my own parents some of the questions I’ve always had around their feelings towards my diagnosis, my diabetes management and how it’s transitioned into my sport.
The below video was recorded with own mom on a Facebook Live Q&A session on the 26th January 2018. It’s around 1 hour 15 minutes long and we hope that it gives another perspective for you to access around parenting a type 1 diabetic with sporting aspirations. We don’t just discuss sport, as we tackle a bit of everything in this session to give a rounded view of the challenges parents face.
I’d like to thank my mom for giving up the time to help us create this great content and please feel free to share your feedback and views.
Head over to our Facebook page to see more Q&A’s very soon.
Enjoy.
Chris
DISCLAIMER – As the discussion is led by our own experiences and not necessarily supported by Healthcare Professionals any advice you take from this video should be signed off and supported by your healthcare team.
